SELF NEGLECT: MESSAGES FROM RESEARCH
Suzy Braye & David Orr, University of Sussex
Michael Preston-Shoot, University of Bedfordshire
Presented by Suzy Braye: 15th May 2014
PAVAUK, Birmingham
Sources of research evidence
Scoping the concept of self-neglect
2011
Addressing workforce
development needs
2013
Review of serious case
reviews
Exploring self-neglect practice
2013-14
What do we mean by self-neglect?
Lack of self- care
• Personal hygiene
• Daily needs• Refusal of
essential care
Lack of care for living environment
• Hoarding• Squalor• Infestation
To a degree that endangers own or others’ safety, health & well being
Lack of standard definition – broad scope
What causes self-neglect?
• No overarching explanatory model• May arise from inability or unwillingness, or both• Influenced by societal and professional constructions of
‘the problem’
Inability Lifestyle choice
At best• Complex interplay of association with physical, mental,
social, personal and environmental factors• Underlying personality disorder, depression, dementia, obsessive-
compulsive disorder, trauma response, severe mental distress, and/or neuropsychological impairment
• Diminishing social networks and/or economic resources• Physical and nutritional deterioration • Once functional behaviours and personal philosophy• Attempt to maintain identity and control
• Some manifestations have stronger recognition as a disorder (e.g. “hoarding disorder” included in DSM-V independently of OCD)
The perspectives of people who self-neglect?
• Little previous research done in this area• Emerging themes from the scarce literature
• Pride in self sufficiency• Connectedness to place and possessions• A drive to preserve continuity of identity and control• Traumatic life histories and life-changing events • Shame and efforts to hide ‘evidence’ from others
• Emerging themes from our study: • Lifelong pattern of behaviour held in balance• Traumatic event disturbs that balance• Escalation to the point that someone else gets worried
Service users say …
Neglect of self-care
Demotivation: homelessness, health, loss, isolation – self-image, negative cognitions
Different standards: being indifferent to social appearance
Inability to self-care: mental distress, physical ill-health, homelessness
Neglect of environment
Influence of the past: childhood, loss, abuse, bereavement Positive value of hoarding: emotional comfort, connection to something, “my family”, hobby, to be appreciated by others
Beyond their control: voices, obsessions, physical ill-health, lack of space
How can we understand the challenges?
Organisational & service
environments
Mental capacity
Self-neglect per se
1. Challenges from self-neglect per se
The sheer complexity of self-neglect
Understanding what’s going on
Lack of training
Uncertainty about legal frameworks
Engaging with the
individual
Thresholds for
intervention
Adapting assessment
tools
Negotiating value
positions
Knowing what works
Frustration and anxiety
Competing moral imperatives
Respect for autonomy and
self determination Duty of care and promotion of dignity
• “I’m not 100% convinced our coroner ... will have heard about the personalisation agenda and independence, choice and control and I think he will, without a doubt, see this as a failing of services and we should have acted. The man had capacity, you know. He was given all assistance but basically he said, ‘look, I don’t want you in my house; I don’t want anything that you could offer me. I’m quite happy living in the manner in which I want to live, and go away’ ... I think it’s a real difficult issue.”
2. Mental capacity affects perception of risk and intervention focus
Respect autonomy to self-manage
Respect autonomy
but high risk remains
Provide support to
contain risk
Best interests
intervention to reduce
risk
Mental capacity
Mental incapacity
Self-care Self-neglect
Mental capacity
• Capacity in the literature involves not only • weighing up information and being able to understand consequences of decisions and actions, but also
• the ability to implement those actions• Decisional and executive capacity
• “Articulate and demonstrate” models of assessment
Decisional capacity
Executive capacity
Capacity
What about mental capacity in practice:MCA 2005 guidance
• A person is unable to make a decision if they cannot:• understand information about the decision to be
made (‘relevant information’)• retain that information in their mind• use or weigh that information as part of the decision-making process, or
• communicate their decision
Is there room here for executive capacity?
Understanding relevant
information
This could be seen to include information about the
consequences of taking or not taking certain action, and the
likelihood of those consequences
Using or weighing
information
“Sometimes people can understand information but an
impairment or disturbance stops them using it ... it leads to a
person making a specific decision without understanding
or using the information they have been given.”
In practice…
• Decisional capacity is prioritised• The absence of executive capacity may not be taken into
account in determining that an individual has capacity• Understanding the need to act, and deciding to do so, may be
assumed to imply capability to implement the action• Assumption of capacity to make decisions about refusal of
intervention may miss the complexity of ‘relevant information’ or ‘using and weighing information’
• Capacity to execute simple functions may mask lack of capacity to sequence decisions in the more complex ways necessary to minimise risk
• An emerging capacity picture over time may not be pursued.
3. Challenges from organisational & service environments
Finding an organisational home for self-neglect: “everyone’s, no-one’s, someone
else’s business”
Outside definition of
vulnerable adult: SAB business?
Diverse agency cultures
thresholds and practices
Eligibility barriers to
preventive work
Lack of clarity on information
sharing
Workflow patterns based on time limited
care management
No forum for shared decision-
making
Care pathways to independence
that are not achievable
Lack of legal literacy in face of a complex
legal framework
Learning from SCRs
Practice and policy
development
Guidance to staff
Interface with safeguarding
Multi-agency approach
Lead coordinating
manager
Skilled & timely capacity
assessments
Understanding of available legal rules
Training informed by
research and by SCRs
Supervision that challenges and supports
Effective interventions? No gold standard from the literature
Harm reduction strategie
s
Cleaning as a short term
solution only
Assistance with routine daily
living
Early intervention to
prevent entrenched
patterns Combined approaches:
MI, CBT, sorting, tasks
SRI medication in some cases
What’s working in practice?
Negotiated
Sensitive & wide-ranging assessmentCare by consent: start with what can be agreed
Support to life transitions
Coerced
Threat to tenancy
Environmental health
Leverage to secure engagement
Relationship building: piecing together understanding of the unique experience and working towards trust-based acceptance of intervention
• “You have to really get to know someone before you know what self-neglect is about.”
• “People who self-neglect don't want lots of people doing things for them, but support to get by…we’re mindful that if we push people to do things they don’t want to do, we will get nowhere at all because they’ll shut the door.”
• “Respecting lifestyle choice isn’t the problem; it's where people don't think they’re worth anything different, or they don’t know what the options are.”
What service users highlight - engaging with professional help
• Already wondering: spot the moments of motivation, good timing
• Finding help is difficult: lack of knowledge, accommodation
• No choice (state of home) but directiveness may be seen as pushy & unhelpful
• Right kind of input: not intrusive, gender, cost, encouraging, hands-on, person-centred, going the extra mile, reliable, compassionate, understanding
What service users highlight – effective interventions
• Support with clearing if sensitive & participatory; care packages that are relevant to perceived needs
• Mental health services, such as CBT or counselling, to tackle deep-rooted issues
• Links with other service users• Relationship-building: connection, emotional literacy• Meaningful activity• Carer support• Accessing advocacy and resources, such as benefits• Re-housing• Information
What practitioners highlight• Can feel lonely, helpless, frustrating and risky• Strong management support and multi-agency collaboration
crucial• Places and spaces to discuss ethical conundrums, such as
meaning of consent & duty of care – panels, meetings, case conferences
• Time to build relationships – finding the right person & levers to engage
• Work with neighbours and family too• Qualities of persistence, patience, resilience, limited
expectations, respectful curiosity• Good understanding of motivational interviewing, capacity and
law• Little victories, baby steps
Workforce and workplace priorities …
Staff development and learning,
building understanding and
capability
Organisational and interagency, systems to support practice, shared assessment
and decision-making
…to develop:
Organisational culture and practices that give practitioners the space and time for building relationships of trust
Flexibility in what are expected as case outcomes
Training and practice development mechanisms to facilitate key aspects of effective practice
Interagency systems for shared assessment, intervention, risk-management and decision-making
Further information on the research
• Braye, S., Orr, D. And Preston-Shoot, M. (2011) Self-Neglect and Adult Safeguarding: Findings from Research. London: SCIE.
http://www.scie.org.uk/publications/reports/report46.pdf
• Braye, S., Orr, D. and Preston-Shoot, M. (2011) ‘Conceptualising and responding to self-neglect: challenges for adult safeguarding’, Journal of Adult Protection, 13, 4, 182-193.
• Short presentation on the 2011 research findings http://www.communities.idea.gov.uk/comm/landing-home.do?id=2962596
• Braye, S., Orr, D. And Preston-Shoot, M. (2013) A Scoping Study of Workforce Development for Self-Neglect. London: Skills for Care. http://www.skillsforcare.org.uk/NMDS-SC-intelligence-research-and-innovation/Research/Research-reports/Workforce-development-for-self-neglect.aspx
Professor Suzy Braye, [email protected]; Dr David Orr, [email protected]; Professor Michael Preston-Shoot, [email protected]